A specialist Macmillan nurse in neuro-oncology at Addenbrooke’s Hospital in Cambridge has stressed the importance of using plain terminology when breaking devastating news to seriously ill patients and their families. Ingela Oberg made the appeal as she revealed one in five patients walked away from a diagnosis consultation without fully understanding what was wrong with them and what the implications might be.

“I always use the word cancer because I think that’s what they need to know”

Ingela Oberg

Addressing a conference for nurses and allied health professionals, Ms Oberg said: “The period around diagnosis is one of immense distress and uncertainty and I think we can do a lot to alleviative that.”

Ms Oberg was speaking at a study day hosted by the Brain Tumour Charity at the University of Birmingham on Wednesday, which aimed to share best practice when caring for people with brain tumours.

Having held her role since 2009, Ms Oberg said she had seen bad news broken badly many times and suggested clinical nurse specialists may be better equipped to have these conversations than clinicians or surgeons because of their “innate” compassion and communication skills.

However, Ms Oberg said it was essential to avoid using technical terms that patients may not understand such as “grade four glioblastoma” when giving a diagnosis as they could wrongly assume it was benign.

She said: “I always use the word cancer because I think that’s what they need to know – I’m not saying I’m right, but it works.”

“We need to demystify palliative care so they know it’s about living well with their diagnosis”

Ingela Oberg

Ms Oberg added: “Whether you are breaking the bad news or not you should be present at the time as their key worker, so if you know and if see the patients glazing over during the consultation then have another conversation with them after and go through it again in plain terminology and make sure they get the chance to ask their questions.”

She also warned against using sugar coated terms around death as well as using rhetoric like “warriors” and “battles”. “It’s not a battle they can necessarily win and for those patients who have lost the battle does that mean they didn’t fight hard enough,” she told delegates. Ms Oberg urged nurses to remember the “five Ts of grief” – time, talking, touch, tea and tears, and where possible to avoid having these tough conversations in clinical settings.

It is also important to be prepared before speaking to a patient and learn about their diagnosis, prognosis and treatment plan, Ms Oberg said.

While acknowledging it may sound strange to some, Ms Oberg said tears were to be considered a good sign, because “it makes me understand they have understood the severity of the situation and they have grasped what we have told them and what’s to come”.

Above all, Ms Oberg said it was vital to be honest with patients and their families, giving them realistic expectations about the future and finding out what matters to them.

Later in the conference during a panel discussion chaired by Ms Oberg, delegates discussed when a patient should be told they are to receive palliative care and the possible impact this could have on them.

“I don’t think there is specific process, I think it’s about identifying that patient’s needs”

Anna Crofton

One palliative care clinical nurse specialist in the audience said: “A lot of patients come to us and say when they are palliative care it’s almost as bad as giving them their diagnosis.”

Anna Crofton, an advanced nurse practitioner in neuro-oncology at the Walton Centre NHS Foundation Trust in Liverpool, who was sitting on the panel, said: “It’s very difficult to know when the right time is to refer patients in, we don’t want to take away that hope for that patient.

“It’s a very fine balance,” she said. “I don’t think there is specific process, I think it’s about identifying that patient’s needs.”

Ms Oberg said she believed patients should be referred to palliative care when they are given a diagnosis of a terminal illness. “It’s about enabling patients to live well with that diagnosis, it’s not end of life care, that comes further down the line, and I think there’s huge misconceptions about those two things,” she said. “We need to demystify palliative care so they know it’s about living well with their diagnosis.”

Panel member Nichola Peat, physiotherapist at Guy’s and St Thomas’ NHS Foundation Trust in London, said she often found showing patients pictures of a hospice helped to allay their fears around palliative care and that they were usually “beautiful” and “colourful” environments.

There was also a suggestion from an audience member that “withdrawing treatment” could be used as an alternative term. However, another said this may indicate to patients that treatment was being taken away from them when the reality was that it was not working anymore.